omaeva

Members
  • Content count

    161
  • Joined

  • Last visited

About omaeva

  • Rank
    Silver Member

Profile Information

  • Location
    CA
  1. Annie, I just wanted to add my two cents in. I recently had surgery on my right hand to remove extensive and huge calcinosis from 4 fingers, on top of it I had the nerve sympathectomy. It was worth going under for me, because it was a 5 hour surgery. Even then, the doctor was not able to remove all the calcinosis but the pain has eased quite a bit. September I will do my left hand. Now I have one on my foot that has returned. Initially I had this done at the doctors office, lidocaine injection and she just cut away at the area. If it's just one, and it's not on an area where it can damage the motion of your hand then just get it done at the doctors office. If it's extensive, big, or can damage nerves or tendons, please just have the surgery and the occupational therapy after.
  2. I've been suffering from RLS for as long as I can remember. Right now I take 30mg of pain medication 30 min before bed and lidocaine patches on the most sensitive areas if I wake up in the night and the pain has traveled. It's a huge issue for me, almost more than the sclero and fibro.
  3. Enjoytheride, I followed your advice and noted everything I had tried to battle fatigue. About 15 days from then I received my approval. Thanks for the advice.
  4. Oh goodness I do this all the time. My fingers are just full of Calcinosis and has become bad enough to where I am now having surgery. Getting them to stop ulcerating is hard. I suggest keeping them clean and dry, use triple antibiotic ointment, and try not to pick to them. Though I have to admit, I have one on my thumb that popped on it's own and it's been a few months now. Makes it very hard to do dishes etc with it. Good luck!
  5. Ditto to exercise and massage. My massage therapist is amazing, although the hour I am with her is not so fun. I have a combo of Sclero and Fibro, but I find relief for quit a few days after.
  6. How you are describing your nails is what mine look like exactly. And you can definitely see capillaries on mine with a naked eye, but the actual pattern you have to see under the microscope. I haven't had more Sclerodactyly symptoms in years. Although my skin is always itchy and very dry. I even hate washing my hands because it gets itchy right away. Having lotion on me is a must.
  7. The effects of plaquenil for me are mild but every little bit helps. For me it really helps with the swelling and some fatigue but not much. The first time I took the generic drug I got a weird reaction about a month in. I got dinosaur hands, basically a weird rash of bumps like dinosaur skin. It lasted for about 2 weeks, and my doctor switched me to the brand name which I took for about a year. Then after taking some time off, I am back on the generic so we'll see what happens now.
  8. Sometime I wish there was just a 'like' button on some posts! I'm up for a margarita party. Jeannie, I hope you're feeling better and better each day! I have the worst time recovering from colds/flu's. Stay toasty warm and get some furry slippers (aka doggy bellies)
  9. Well my doctor has already submitted a letter, a medical history, etc. For my insurance company this is the LevelI review where they want to hear from me. I found some sample letters online. I've been trying to find some studies but nothing much is there. Just a lot of user experiences.
  10. I was told that people with autoimmune disease should not donate blood.
  11. Has anyone tried any medications for fatigue? I was recently prescribed Nuvigil that really helps get me through some of my worst slumps. The problem is that the medication is not covered by my insurance for the treatment of chronic fatigue. I have also read that adderall has been prescribed to some patients to help manage their fatigue. Since nuvigil is not covered and it is very expensive ($300 for a month supply) I am trying to appeal the decision. If anyone has any advice on what to write in the letter that would also be appreciated. Thank you O
  12. I've never heard of it but I'm not surprised. I have had Raynaud's ever since I can remember, then fatigue set it early in college. And then my 3rd year in college I was finally diagnosed when the fatigue became unbearable and I started noticing calcium deposits and little red dots all over the place.
  13. Susie good luck with your appointments! And how nice that your hubby is coming along as well! Did you know that Virginia Mason hospital in Seattle has scleroderma specialists too.
  14. All the advice so far is really great. I just wanted to add that, put your gloves on while you're still warm, not when you start feeling cold. Sometimes switching to mittens might work better, because your fingers are together and will stay warmer. On top of it in the winter (even in sunny California) I wear the fingerless gloves at work, all day, and then switch into regular gloves right before I go outside. All in all I've had some medications work, others not, and others I couldn't handle and I am now going to be having surgery.
  15. You might be thinking of Cutis Marmorata. I get this very often especially if I'm feeling cool. It's mostly on my legs and arms, looks like I've got a faint, fishnet blue stocking on. The proper term for when it happens when you are exposed to cold is Livedo Reticularis.